Everyday Hero: Stuart Millheiser answers ALS patients' pleas

April 1, 2013

Updated Aug. 21, 2013 1:17 p.m.

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Stu Millheiser founded and runs ALS Guardian Angels from his dining room table in San Juan Capistrano. KEN STEINHARDT, ORANGE COUNTY REGISTER

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Stu Millheiser, a former pharmaceutical company exec, gives thousands each year to support struggling families all around the country -- and the world --who have a loved one dying of ALS. KEN STEINHARDT, ORANGE COUNTY REGISTER

“He’s an angel — and a pit bull. He is fighting for people who have lost the ability to do so for themselves. I hold everyone to a higher standard having known him.” – Lisa Jones, ALS Guardian Angel volunteer

“Sometimes people are skeptical — ‘You’re telling me this guy is actually sinking his own money into this hopeless cause?’ Yep. The mental strength it takes to do what he does is amazing. There is never a happy ending. His goal is to make the process have as little pain as possible.”

–Shaine Millheiser, daughter

Every day, Stu Millheiser wakes up in his beautiful home atop a hill in San Juan Capistrano. Goes down to the kitchen. Grabs a cup of joe.

After this, it would be perfectly natural for a well-to-do retired exec like Millheiser — in the early 2000s he sold the generic drug company he founded — to head out to the golf course for a few rounds.

Instead, Millheiser makes his way to the dining room, where the long, formal table is covered in semi-neat stacks of papers. He sits down at the computer situated at the far end. And then, every day, as he has since he started an organization called ALS Guardian Angels in 2007, he stares unflinchingly into the face of desperation that awaits him there.

Please, can you help get $35 for a pair of new eyeglasses.

Please, can you help to pay the utility bill so I can have heat.

Please, can you help me find a motorized wheelchair so I can get around.

Please can you help stop the bank from repossessing our home, since my mom is totally paralyzed.

Please, can you hold the hand of the dying patient as we disconnect his respirator? His family is nowhere to be found.

He scrolls through screen after screen full of these pleas that arrive by the dozens, from as far away as Brazil and Macedonia, from Maine, from just up the road in San Clemente. Suffering knows no borders for people afflicted with the devastating illness of amyotrophic lateral sclerosis, ALS. Popularly referred to as Lou Gehrig's disease for the famous baseball player whose life was ended by it, the disease attacks the nerves that direct most muscles, eventually completely paralyzing the patient. The long illness is expensive, debilitating people financially as much as it does physically. Over half of those diagnosed with ALS die within three years. It has no known cure.

"To me, there is nothing worse in this world. You couldn't get any worse," says Millheiser, who, once, years ago, was in a hang gliding accident that broke him up pretty bad. He spent months recovering. "I can't go two minutes without scratching an itch, and when I see these people who can't even move, who will never move again...."

No one in Millheiser's family has the disease. He doesn't have it. This whole thing got started when his daughter, Shaine, was going to San Clemente High and heard about a freshman girl whose father was dying of ALS. (He's proud that his daughter Shaine, now a Ph.D. candidate at the University of Texas, is studying ways that nutrition factors into the disease.)

"The girl was coming to school just exhausted — she was her dad's caretaker — and depressed, crying all the time. Her dad was this burly Marine, and they were getting evicted," remembers Millheiser. "I say OK, let me see what I can do."

What he could do was pay off their mortgage enough so they could get back on their feet, and bring in some help so the family could get a breather. But then he heard about another local family whose kids were not going to be able to return to their school, who never got out because they were slaves to their mom's illness. So he paid the kids' tuition, got the family home health care.

Quick as a bush fire, word spread that there was a guy who was willing to help those who suffer with a disease that is largely invisible in the culture at large. "Here's the thing: These people are mainly old. They are incontinent. They are smelly. Nobody wants to be near them. They're not cuddly. There are no survivors, so you have no people getting together to do fundraisers. Nobody gives a damn about these people," says this unlikely angel about how he got his wings.

Far from some heavenly creature in milky robes, this angel is a tough-talking guy who grew up in Brooklyn's Bensonhurst area, a part of New York that's not exactly a garden spot. Millheiser still walks like he's rushing to catch a train even when he's just moving through the foyer of his house. He's got muscles in shoulders like somebody who's thrown a few punches in his day. Been in some fights? Fuggedaboutit. "I've always had a temper," he admits.

Like the time he was "escorted" out of a nursing home.

"They took this lady who was paying for a private room and they put her in with four others. She could not do anything about it. They don't have her out, they don't bathe her ... so I just went ape ...."

ALS Guardian Angels is listed as a 501c public charity, but let's tell it like it is. It's the Stu show. The corporate office? Stu's dining room. The major donor? Stu. The secretary who answers the emails? Stu. The one who flies across the country to hold the hand of the dying? Stu.

And then there's Lisa Jones in Atlanta, who started working with Millheiser over two years ago after a friend of the family's was diagnosed with the disease. She says after researching different organizations, she was attracted to working with him because of the "pureness of what he does. One hundred percent of every dollar goes directly to help people in need. There's no overhead."

"I like to say he gave me the opportunity to beg for my volunteer position," she says with a laugh, noting that it took her six months of steady phone calls to convince him that she was serious. "He kept telling me, 'You don't want to do this. It's too hard. It's too sad. It can be monotonous.' He's very protective of the people he helps."

Sitting in front of his computer, his eyes travel over screen after screen of messages, each one with a story, like the teenage boy Hajime, the youngest person he had ever known to have ALS and "the one who broke my heart." Hajime's dream had been to return to Japan one last time to see family, but by the time the trip was organized he was too ill to travel. So, Millheiser paid to fly his entire family to see him in the States.

The enormity of the suffering was affecting his own health at one point, so Millheiser took a break from answering any requests. "I now know what clinical depression feels like," he says. "It's worse than any physical pain I have ever known." But after a few weeks of seeking therapeutic help, he returned to the dining room table again.

He measures rewards in moments where "the sun pokes through the clouds," like his and Jones' recent success in foiling customs bureaucrats in the Ukraine to get a respirator to a patient there.

Says Jones: "We look at Stu and think, 'How can someone be this way, give so much of himself?' Stu thinks, 'How can anybody not be this way?' "

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